Queen of Sleep

Living with narcolepsy: a personal journey

Posts Tagged ‘dexedrine

Narcoleptic Concept of Time…

with one comment

What time is it? What day? What year? How old I am?

I have always found the concept of time confusing. Obviously, time goes faster when you’re asleep and slower when you’re not. Faster when you are enjoying yourself and slower when you’re not. At the moment some of my friends seem to be going through all sorts of age related crisis. They seem to be anxious about not reaching a certain level, having had time to do certain things or have certain things in life. I look back at them in bewilderment and reply: – you are so successful why worry about the things you do not have when you can cherish the ones you have? I have always found myself feeling very immature and mature at the same time. Sometimes I am anxious that I have slept away a great part of my life but then I stop myself and realise that I have acquired other types of skills than my peers. They have now been working for 10 years plus whereas I have worked in many different environments. I tried many thinking that I couldn’t find anything that suited me. Today, I realise that I have acquired a multitude of different skills. However, my peers seem to have acquired a much more solid lifestyle, mortgage, children, insurances etc. Sometimes, I get envious because I tried for so many years to become what seemed to me to come so easy for most. The normal office lifestyle of having a 9-5 job. Most of the time, I am not exactly sure what I am envious about, I would probably been bored out of my mind by now. Do you feel old when you are tired and younger when you are more alert? I have noticed that when I focus my energy into 1 task, I get very intense – nothing else matters! When I don’t, I feel as if I don’t do much at all. It’s almost as if I am trying to catch up with lost time, unconsciously.

This year I thought I was getting a year older than I was until my mother kindly reminded me that was turning 34 and not 35. Why did I think I was turning 35? Time is confusing. Cuts up the day and night into chunks of time.

Most people seem to be embarrassed celebrating getting a year older after 30-40 and continues to celebrate 29 or 39 for the rest of their lives;) Today, I asked a lady how old she was. I know it is supposed to be rude (I couldn’t help it) to ask a lady how old she is, but why? Why are women (and some men) so reluctant to answer that question? What is there to be embarrassed about? (I can answer this question but it makes me depressed so I won’t, contemporary cultural identity and commercialism is depressing:() I think we should celebrate every year! Celebrate that every year we are getting older and wiser! Is it not amazing to celebrate that we are growing as a person and a human being? What is there to fear?

Planet Narcolepsy describes automatic behaviour in this way: Many people don’t remember what happens when they go into this trance-like state where they continue their normal activities unconsciously.  They are just “there” one moment, and then they are not.  Others seem to experience this automatic behavior in a sort of “half-in/half-out” state, where they realize something is not quite right, but they don’t understand what or why until it is over.  While it’s happening, there is no real concept of time, and although it is not unusual for someone to carry on a conversation, it is not likely to make much sense at all. Of all the symptoms, Automatic Behavior is potentially the most embarrassing, especially for someone who does not know what it happening.

While it’s happening there is no real concept of time. Sometimes when I fall asleep, I have no idea if 30 seconds of 1 hour has passed by when I wake up. It’s disorientating. It would be disorientating for most people. My time is probably shorter because it is cut short and cut up by sleep. The day is cut here and there which makes the concept of time even more fractured. Luckily,  my medication has helped me to control my time better and currently my day is slowly, slowly getting longer.


Written by Queen of Sleep

December 18, 2010 at 11:06 pm

Positive thinking and Placebo effect

with one comment

Let’s now move away from the traps of negative to positive thinking. I have been writing about the importance of positive thinking in the past. When you take a pill that a dr. has told you will make you better or cure you and you trust your dr. you believe that what is says will come true. For me, this is positive thinking. You start to believe that it will turn out to be the solution (or part of a solution), you prepare for it and you look after other areas of your life too, you become happier because you have a positive goal in sight.

You start to relax and you look for signs of recovery – at this point you are helping your body to recover or improve. Most people will start to experience an improved lifestyle because the greatest bandit of all has been eliminated: stress. If the pill is a placebo or really works does not matter at this stage. You are experiencing the beginning of moving towards wellbeing and you are allowing your body to relax more deeply aiding it to start the healing process. This is why placebo is the most powerful medication you can get.

Let’s move on to medication for narcoleptics. We know that there is no cure and medication is only treating the symptoms rather than the cause. Still, if you believe your lifestyle will improve you are already halfway there and this is the power of positive thinking.  It’s impossible to have a completely impartial approach to taking a new medication so your mindset will more or less manipulate the outcome. I know that I am a positive thinker because every time I have had a negative side effect, I get surprised, thinking it can’t possibly be the medication. At the moment I am slowly improving but I am not completely without side effects from Dexedrine. Because I am feeling better, getting more confident and more outspoken, I have noticed that one of my alter –egos have come to the fore front more and more. Now, is it part of my personality or a side effect of the medication? Probably both.  Occasionally, I get slightly high and start talking excessively and my rebellious trannie alter –ego comes out. I have to watch what I say and to whom: discernment is needed here.  Another side effect is a slight feeling of paranoia – luckily this does not happen too often. Apart from that I seem to take very well to the medication and I am getting better at managing prescription renewal and talking the right amount at the right time.

Read more: Definition of the placebo effect

Written by Queen of Sleep

December 15, 2010 at 9:59 pm

All this Drama…Panic attacks…

leave a comment »


Acer Palmatum

Acer Palmatum at Wisley Gardens

My life is for sure never boring and for that I am grateful, but the ups and downs, the amazing beauty mixed in with panic attacks drives me….
I have not had a panic attack for months and today it happened again. On my way to an RHS Garden, I got lost on a train station in the countryside. My breath got more and more tense, tried to focus on my breathing for about 2-3 minutes and then tears started welling up. For the first time ever, I started to understand how the panic attacks work on me. It’s like I leave my body, my rationality is intact, telling me to “stop crying it’s not real”. Eventually, I calmed down and got to my destination but it makes me think of all the times it used to stop me from going out. I would get so stressed and panic, my body would think it was about to enter combat, and I get extremely sleepy. I thought that I had developed panic attacks ( sounds strange, I know) as a way of dealing with undiagnosed narcolepsy – extreme sleep deprivation until I came across this website that lists 12 reasons you might be getting panic attacks: Deal with Panic Attacks

I am especially looking at:

Medications – There are certain drugs that can cause interactions in your body that can trigger panic attacks. Examples include Ritalin and Fluoroquinone type antibiotics. This is another reason why you should always read the labels on any medications very carefully before taking them.

Pharmacological Triggers – Caffeine, alcohol and amphetamines for example can act as triggers in certain people because of the way that the chemicals in those substances interacts with that persons biology. This is by no means true of everyone, but it is easy to see how this can occur if you consider alcohol as an example. Some people get very placid and calm on alcohol, whilst others get violent. And the same is true if you are looking to deal with panic attacks.

and possibly;

Biological Reasons – People who suffer from various diseases like hypoglycemia and even Vitamin B deficiency can be a precursor for a Panic Attack.

How typical of me to think that it’s some kind of  learnt behaviour when it’s clear that it is a side effect of the medication.  Reading about triggers of panic attacks makes me feel a lot calmer. Next time it happens, I will know that it’s my biochemistry playing up and it will be easier to deal with. Now it’s time, to cut down on my excessive coffee consumption.

I have been distracted by this and night terrors during the last couple of days and I have not updated my blog. As a consequence, I have neglected going to the gym and using Shakti Mat since Saturday but today I have the strength to get back on track.


Written by Queen of Sleep

November 2, 2010 at 11:18 am

Is There a Cure for Autoimmune Diseases?

leave a comment »

Do we listen to our doctors or bodies? Treat the cause rather than the symptoms sounds like common sense to me. How come Modafinil, Xyrem, Amphetamines and Anti-depressants only treat the symptoms?

Doctors say: it’s because we don’t know enough about what causes the disease. We need more research and more money to carry out research.

Read this article about a girl suffering from Raynaud’s disease and make up your own mind.

Written by Queen of Sleep

October 10, 2010 at 9:35 pm

UCB Pharma stopped making Dex?

leave a comment »

Apparently UCB Pharma has stopped making Dexedrine and quite a few narcoleptics have found that they only have managed to get half of their prescription  or have had to wait 3-5 days before getting the prescription filled. Go here for some interesting reading: Dexedrine: Potential BIG supply problem

Added 22/09/2010

When I went to my pharmacist 2 days ago, I could only get Dex for a few weeks – he needs to order more. I will probably get another brand name.  I went to see him today again. Still no Dex – it normally takes 24h hours for them to order more….


Today, my pharmacist had the remainder of the medication for me to pick up. This time, I got Dexamfetamine Sulphate produced by Auden Mckenzie.

Written by Queen of Sleep

September 19, 2010 at 10:36 pm